Hello my fellow comrades. We don't know each other yet, but I hope some of my blog and my thoughts on living with AIDS will connect with some part of you. I'm new to the blogging world, as I'm "technologically challenged". If you're over the age of 45 as I am, you remember that there was a time, not so long ago, without internet, cell phones, cable TV or remote control.
So, here I am about to share some of my life and bare my soul with complete strangers. I'm both terrified and thrilled. But, when I was asked to do this, I figured, "what the hell?" Living with AIDS has taught me that nothing can be achieved without taking a risk. Sometimes, you fall flat on your face. That doesn't bother me too much. I've fallen flat on my face so many times I can't even count them. Sometimes, I had to crawl and sometimes, I just wanted to just lie there and wallow in my own misery. But those times didn't last long. There is a certain freedom of living in the moment now and taking risks. When you've already faced death and survived, the rest of the terrifying stuff seems small and trivial.
I'll give you a little background about me, so you know where I'm coming from. I'm what they call a "long term survivor". I was infected with HIV at the magnificent age of 23. I'm 46 now, which means that exactly half of my life - and my entire adult life has been spent fighting the good fight. I would not have chosen this for myself for sure, but since I've been handed this deck of cards, I'm playing it as best as I can. You can't go back, so I'm stuck with me. I've grown to know myself and realize that one must change, adapt to new situations and evolve in order to survive. I guess Darwin was right. I've evolved and so has my virus.
Back in '85, AZT was not even available. I was told that I had five years to live by my doctor, the "best" ID doc in my town. I actually believed him and was at his mercy for the next 12 years thinking that he would "save" me. I finally realized that no one can save me. I must save myself or at least try my damnedest. I will not "go silently into the night". It takes a bit of luck, a good doc you can trust and who doesn't have an ego bigger than Zeus. Of course, a few cloves of garlic hung from your neck to keep the vampires away and six "Hail Mary's" and seven "Our Father's" can't hurt. (Catholic girl here)
Hopefully by now you may have figured out that I either have a wicked sense of humor or am completely insane. You are correct. It helps to be a bit mad and a good sense of humor, an appreciation of irony, trust in destiny and my good friends "hope" and "faith" gets me through the day. That, and a nice, smooth glass of Chianti.
I'll do my best to be honest and hope that I can connect with your spirit, your sense of humor and your common sense ... or lack of it. Because sometimes it takes a big risk to divulge and explore your inner self in order to rise above the pain, the despair, the constant disappointments and the sheer terror of living with AIDS.
About me - I pull no punches. I throw them. I'm the kinda girl who says it like it is. I try to be as kind as I can, but sometimes it takes a kick in the gut and someone to tell the truth to make you stand up and deliver. I try my best not to be rude. But I admit that most people don't like to hear it straight. So, I'm working on my delivery. Sometimes it hurts to tell the truth and I feel the pain and sometimes suffer the consequences. But I must speak the truth, even if it works against me.
So, here it goes -- my new journey of blogging about living, dying and surviving a long time with AIDS.
We're all faced with life and death decisions, and it's no coincidence that I'm starting this blog at the cusp of one of the most important elections of our time. Politics has given me a reason to keep fighting ... against discrimination, ignorance, ideology and the bad polices of this administration (and others) that have fueled this disease for far too long. I realized that the only way to survive was to learn how policies are made and what must be done to change them. There's a lot of talk about Iraq, but what about AIDS? What is the next President going to do to address the issue of AIDS in the USA? Where does he stand on this topic? Does he think that the "free market" will take care of us? Does he think that insurance companies will "compete" to cover us for our astronomical health bills? I don't know about you, but Blue Cross/Blue Shield and Aetna are not "competing" with each other to cover me. What about PEPFAR? (President's Emergency Plan for AIDS Relief) Do the candidates want to cut funding if it includes "family planning" rather than "abstinence"? These questions must be asked and no one is asking them. Where is the outrage? Have we gotten so brainwashed and become so complacent, self absorbed and lazy that we don't even want to keep our elected officials accountable? Where is the media on this issue? Where are WE on this issue? Do we really care enough to make our voices heard? These are issues that matter most to me.
I'll end this entry with some words from a song by Bruce Springsteen, my favorite singer, musician, songwriter, philosopher and political activist.
"Well now everything dies, baby that's a fact. But maybe everything that dies, someday comes back. Put your makeup on. Fix your hair up pretty. And meet me tonight in Atlantic City."